What I’m Reading

I’m trying to read more print, and less on a screen. I chose some books to read during Lent. One is a Lenten journal and study guide, one is more of a memoir that was given to me by a friend, one is a memoir I heard about from the Hope Heals ministry (love them, and the whole story behind it), one is historical fiction, one book is about female saints throughout the ages, and of course, the Bible. I’m going to try to read some every day. That doesn’t sound very hard. It shouldn’t be, but a lot of times, I’m simply too tired to concentrate! Closing my eyes, or letting someone else distract me by staring at a screen is easier. Using my mind to take in new facts or opinions and then process them takes more energy! I am looking forward to seeing what these authors have to say. I read the Bible regularly, because I have an app on my phone! Time to go back to the old way, and just hold a book in my hands. I enjoy it, and it is a different experience than screen time. You know?

lent books

I started the memoir by Kate Bowler first. Wow. I had to put it down after about forty-five minutes. It’s something that I will have to digest in small pieces. She is a professor at Duke University, and she was diagnosed with Stage IV colon cancer. She did her dissertation on the American philosophy of the “prosperity gospel.” I have done a lot of soul searching a prayer in my life, but especially since August 2016. I’ve been surrounded by people with many different views on the gospel and what it teaches about healing. It’s something that I continue to study, and pray about.

My friend Rebekah sent me the book/memoir by Lauren Chandler called Steadfast Love.  I picked it up last night. It too, deals with illness and spirituality. So far, it is a little easier to read!

I got this copy of the Bible when I was in Emory Hospital. That was a very difficult time for me. A visitor brought it to me, and I slept with it beside me ever since. The other books, I got from Amazon.

The study guide, “She Who Believed”, is from an organization called Blessed is She. I just opened it in the mail, so I have yet to read one page! We will see how this all goes, and I’ll report back some honest feedback in a few weeks.

What are you reading? What did you like? Not like? I like fiction as well! For now, I am staying away from dark and dreary!

The Apple Doesn’t Fall Far From the Tree

aidan 2

Summer 2014

My plan was to just jump right in and lament my stress over science fair season! However, I can understand how some parents might not be able to relate at all, because their children have different goals than mine do, when it comes to these things. An introduction is in order! I have to put this stress over the science fair into context- it isn’t just science, or projects, it’s BOTH with this particular child.  He is my oldest, the most like me in personality, and I think he hung the moon (not because he’s like me, just because he’s that special!).

aidan 1 His 10th birthday, 2017

The name “Aidan” means “fiery one,” after St. Aidan. He was a cool guy- read about him if you get the chance!  I’m sure anyone could write for hours and hours about someone or thing that they love. Same with me. I’m not even sure how to par this down! Each family has unique dynamics, and in our large family, his personality affects how the younger ones fall into place. Aidan is, I would say, an “alpha” male or personality. He’s a natural leader (he’s been accused of being bossy by his younger counterparts), Type A (like me), and a bright kid. He started kindergarten when he was 4, and he walked to school everyday- usually without one of his parents- as part of a “walking schoolbus” in our neighborhood. We lived in Michigan that year for James’s fellowship, so our little guy was walking in snow for at least 6 months out of that year!

Like me, he sees the world in black and white, not shades of gray. There is a right way, and a wrong. There are definitely pro’s and cons to this personality trait! We are horrible liars- he couldn’t tell a fib if his life depended on it.  It also makes us rigid in how we like to do things, such as cleaning a certain way, bedtimes, meals, rules, etc. He is like me, times ten. As an adult, marriage has softened my edges and refined my character a great deal. I had to learn how to compromise more, and that there are two ways of doing things! My way isn’t always right:) Aidan, bless him, has an unwavering moral compass, and a tendency to be hard on people who are not in line with him, like his siblings! I think that having a large family is WONDERFUL for us. The sibling nearest in age to him, Rose, could not be more different. She doesn’t kowtow to his demands, she stands her ground like Wonder Woman, and isn’t intimidated by his skills, book-smarts, or sharp wit. It is SO good for him, to have her as his “foil” in our home. God put these special human beings in one place, so that we could all learn from each other, benefit and love one another. Someone’s weakness is another one’s strength. We talk openly about how each person has unique gifts, and that we can’t compare ourselves to others.

Wrestling as babies, Rose cheering him on in his first youth triathlon 2017

For instance, I have never, ever seen anyone with a memory like Rose. She can hear or read something once and recite it perfectly. I don’t know the exact criteria for a photographic memory, but she has got to be close. It’s astounding. Aidan and Rose both attend a children’s ministry group called Awana on Wednesday evenings. They are supposed to memorize Bible verses. Rose can memorize hers in under 5 minutes. Aidan is like a normal person, and has to practice for a while. This irks him to no end! He is very, very, very, did I say VERY competitive?? Everything, his whole life, has been a competition. Brushing teeth, I mean, who can compete when they brush their teeth?? Apparently he can. He does his the “right” way. When he was teeny tiny, his first word was “ball” and a love was born. As a plump, Buddha-esque baby of 8 months, he would sit on the floor and throw a softball to me, over and over again. If I got up to take a break, he would YELL his little blond head off, until I returned and we started again. Always with his left hand. I’m a lefty too:)

   Holding the ball from his first out-of-the-park homerun! Visiting Turner Field, 1995 Braves World Series Trophy

He loved to play baseball in the yard with James from the time he could walk. He would have make-shift bases made out of moss. I’m not kidding- he would slide into second base, which was a giant tree with gnarly roots, and tear up his leg!  Aidan would stand up, with cuts and blood, tears streaming down his little face. “I’m SAFE!!” I would explain EVERY TIME that daddy was NOT going to tag him out, he didn’t have to slide! I didn’t matter what I said…he was not taking any chances. There was no way he was going to lose to dad!  We laugh about that all of the time now. He thinks it’s the funniest thing ever.

aidan 3

Palm Sunday, 2014 I think, playing the role of Jesus

His intense personality spread to other areas of life. He is known and has always been known for his love of food. I know, plenty of kids love treats and are “good eaters.” He’s in a category by himself. When he was little, as my first child, I had all of these goals of things I wanted to do with him to be a “perfect” mom. I took him to story time at the library- like he would actually listen at 13 months. I remember, some kid opened up a cheese stick, and it was all over. He screamed at the top of his lungs because someone else was having a snack. We couldn’t go anywhere for almost three years, where other people were eating.  Restaurants were off limits, because every time a waiter walked by with food for someone else, he hit the roof. Again, he thinks these stories are just HILARIOUS now. He would eat anything- and I mean anything. His physique was, shall we say, sturdy?  Then, around 6 years old, his eating did not slow down at all, but the chunk turned to muscle. Why can’t that be a trait from me?? Why?! How does that happen??

   First summer on swim team, he won Coach’s Award for his age group! 2017

He has six-pack abs, rounded biceps, legs that look like a sprinter. I do NOT have any of those qualities. Darn shame it is, I tell ya. He still loves baseball more than the air he breaths. Everything about the game- the smell of fresh cut grass, warm-ups, the sound of a bat cracking when it makes contact in the sweet spot, pitching a perfect strike, and of course, sliding!! We always watch the World Series together. In 2016, for his October birthday, I got the two of us seats right behind home plate, when the Braves were playing the Tigers- last game at Turner Field. I couldn’t go, because of the pain from my August surgery. That was right before I ended up being transferred to Emory for the full work up and mesh removal. My heart broke that I missed that with him. He still got to go though!

He is so responsible, and helpful around here. Every morning, when I am too sore to get up quickly, he hears the baby making noises in her crib, and he gets her for me. He will bring a warm bottle in for me, and help me get her changed. He helps his little siblings get dressed when they can’t find the button holes:), and he loves learning how to cook. Every since he was little, I thought he was cut out for the military. He thrives on structure and rules, and he appreciates boundaries. His sense of fairness rivals a Supreme Court justice anyday. His competitive streak does not come from me though- the blue eyes, dimples, dominant left hand, rigid take on right and wrong- that’s all me. I wish the six-pack abs were, but alas, those are definitely not mine either! My husband loves sports, but the killer instinct to win everything- that is all his own. Aidan was born with the desire to win every race, hit every ball out of the park, and WIN at the science fair.

science

His first science fair, he did the project all by himself, 3rd grade

Now, on to the topic of the day- his science fair project! He’s very math and science oriented, like daddy. He loves math and breezes through. I worked hard in math, and did well, but it was not a breeze for me! He comes to me a week or so ago and asks, seriously, “Mama, can I split an atom for my science project?” Absentmindedly, I replied, “No hun, that’s kind of dangerous.” “But I’ll do it in the kitchen!” I have NO idea why that would make it safer? I firmly explained why we could NOT split any atoms, anywhere in the house. A few days later…”Mama, could we get a sample of polio from a lab, infect an animal, and observe it?” “Oh my gosh, NOOO!!” Not to be completely deterred, “Ok, what about an insect then?”

I had to get to the bottom of why he was coming up with these outlandish topics. Why couldn’t we just watch a sandwich get moldy? Build a potato battery or something like that?! I asked, but I should have known without asking, “Mom, I have never WON the science fair! I can’t do just ANYTHING, it has to be AMAZING!!” Ok, no pressure or anything. Daddy and I had a family meeting and came up with some ideas that didn’t involve killing a lot of people, and I think we finally settled on a topic today!! Oh thank goodness. The stress of trying to pick a topic was unpleasant. Aidan gets so into things- he doesn’t do anything 50%, he only knows 100%- which is wonderful, but when mom is running on an empty tank, and dad has successfully fought off the flu and been sleeping for a week straight, we are just plain tired!

I’ll have to post some pictures of the finished topic. I love that kid. We can finish each other’s sentences, read each other’s thoughts. I love my children equally, but not the same. Each one of them is SO different. I would have thought that they would take after each other, share some traits. Nope. God gave us 6 individuals who could have been from different planets. I absolutely love that. It made each pregnancy that much more exciting- seeing how different and special each new life would be. Aidan, you are my fiery one. Never lose your fire! Never lose your sense of justice, and your love for all things good and pure and righteous. God has big plans for you buddy!

 

Keeping the faith

 Lana-30

The “before” picture. After Lana was born, we had professional pictures taken. I had no intention of being in them, but she wouldn’t stop crying so the photog told me to jump in. I’m SO glad that I did! Hence the ponytail:)

I was contacted recently by a journalist in New York City. She asked if she could interview me for a story on pudendal neuralgia. I knew that would mean opening old wounds, bearing my soul for the general public, and going over humiliation after humiliation for anyone to stumble on. I have been brought so low, so many times, I’m almost immune to it now- almost. I’ve discussed my private parts a hundred times- at least, suffered treatments that were as painful as the injury it self, been shamed for taking medication as directed, and told there was no “cure” for my neuropathy. Through it all, my sweet James stood by my side, and my parents worked so hard to keep our household from falling apart.

surgery

The morning of my surgery. Blissfully ignorant. Low risk, thought I would wake up in about an hour, good to go.

I agreed to the interview, knowing that everything that I said wouldn’t make it into print, gory details are the most interesting to read, and that it would definitely be one more humiliation to add to my long list. Truth is, I wanted to share because ever since the beginning, I kept saying to myself “if I ever feel well enough, I want to be a patient advocate. I want to help other people.” Not everyone has a James, and not everyone has parents, a sister, friends, neighbors, and a church family like I do. This experience would have ended very differently had I been alone. There was a woman in a support group that I joined for a while, who killed herself earlier last year. Her story isn’t that unusual unfortunately. Chronic pain is isolating. I know several people whose marriages dissolved because of health struggles. Friendships change and people feel so alone. I am so incredibly fortunate to have the world’s best friends. I don’t see them as often, but they have visited me here at home and while I was in the hospital. I have had meals delivered for a year and a half (not every night of course, but regularly).

I felt like it was my responsibility to share some, so that someone reading the article, wouldn’t feel so alone. Maybe, one medical student would randomly see the article and think, “hmm… maybe I should look into pain management, and chronic pelvic pain.” It’s poorly understood and studied- there are plenty of opportunities to find patients I can assure you!  Every person with PN doesn’t have all of the same symptoms. Some of the symptoms described in the article apply to me, and some do not.

I could write for days about the spiritual journey that this has been. I will write about faith regularly. It is part of my daily life, my stream of consciousness, my conversations throughout the day, and my decision making process. At the beginning, everything felt like a bad dream. Surely, this isn’t for real? I will wake up? This horror will pass? I actually thought- I have had my “quota” of suffering for the year. You see, before my surgery, I had a difficult pregnancy. I suffered from hyperemesis gravidarum, and migraines that were so severe, I was treated by a neurologist the entire time, and hospitalized a few times. I was bedridden from the nausea and headache pain- it was blinding. I thought, I have suffered so much lately! That is ENOUGH, and this new fresh h-e-l-l has to pass, soon, right? My thoughts also were along the lines of “I’m a ‘good’ person, not an ax murderer, I have 6 kids to take care of, I’m young, this can’t be real. I have to get better! This sort of thing can’t just ruin my life- I don’t believe it.”

Oh Amy. I knew the folly of my train of thought, but I couldn’t stop the freight train of anger and justifying my conclusions to God. He had to be wrong, it had to be a mistake. If I prayed the “right” way, said the right things, the pain would pass, and I could have my old life back! Wrong, wrong, wrong. Through MUCH prayer- I mean constant, soul searching, scripture searching, and just plain crying…I knew deep down that our Lord isn’t a magic genie in a bottle. You don’t say the right words and He grants you your wish. It doesn’t matter how nice you are, or how many kids you have, no one is immune to suffering. To think for one second that anyone has quota that can be met…is ridiculous, and complete arrogance on my part. Suffering doesn’t only happen to the “bad” guys. There are so many people around the world who know pain, what made me so special that I should be immune?

michigan

This was taken before one of the several procedures in Michigan, where I lived for a month. I tried a new type of neuromodulator that ultimately failed. I was forcing a smile, because we were sending the picture to my kids. I didn’t want them to know how scared I was.

God never guaranteed anyone an easy life. HE is enough, that’s sort of the whole point. I can read that over and over, but unless I have lived it- everything else is gone, and all I’m left with is faith, I didn’t internalize it. This suffering, even in the extreme, is temporary. There were so many times that I didn’t pray to live, I prayed that the Lord would let me come home sooner- right then. I couldn’t see around the pain in the moment, couldn’t think five minutes in advance. I begged him to let me go. He, obviously, said “no my child, you are stronger than you think, hang in there.” I know what a dark valley is- one with no light, no directions, just the knowledge that I am supposed to trust. I am supposed to put one foot in front of the other and keep going in the dark. If I do that, trust blindly, I will see more clearly than I ever have before in my life- but not on my time, on His.

I’m not going to link to the article- it’s live, and being well read! I’d rather my kids not read some of those vocab words just yet:)

My grace is sufficient for you (2 Corinthians 12:9)